Unsocial Media?

I’m in writing mode now. But ten minutes ago I was flitting mindlessly around Twitter and Facebook, seeing what was happening in the world. You don’t need to tell me this is a waste of my time, of course I know that. By ‘waste of my time’ I naturally mean ‘waste of my writing time.’

A few months ago, I felt so guilty about the length of time I was spending on social media that I deleted both my Twitter and Facebook accounts. I think this lasted all of one day before I panicked and reinstated them. It’s sort of disturbing to know that ‘do you want to permanently delete your account?’ doesn’t actually mean what you’d think it would, as even after choosing this option your account can be restored.

It’s depressing how social media owns us. We all know how sharing pictures of our kids and our houses and our beautiful pets can make us look needy, narcissistic and fake. Who hasn’t been scrolling through their Facebook or Twitter feed at one stage or another and thought, ‘oh my God, this is a pile of rubbish, why am I still on social media?’

We’re told that social media is ruining the ability of people to make real-life friendships and conversations. Well, I’m sorry, but social media is not the sole scapegoat for people being lonely. I’m sure I’m not the only one who doesn’t live in the same town as any of my family members. For many of us, it’s not a case of going up the road for a quiet natter with family or friends (I have one close friend living in town at the moment). People are out living their own lives in every corner of the world, and it’s social media that is keeping them all connected.

Social media has helped me in three areas of my life: as a mother, a writer and a person with a disability. When Ali was born, my friend added me to some wonderful parenting groups where clueless first time parents like me were asking questions about parenthood. Often I don’t comment: instead I ‘lurk’, nodding silently in agreement with other mums. In fact it was another mother’s open admission on Facebook that she was struggling with PND that ultimately motivated me to get the help I needed, take care of myself and write a blog about it. Knowing that I was not alone really helped. I also joined a reflux survivors’ page when Ali had reflux and seeing other parents come out the other side really gave me hope during this difficult time.

As a writer, being present on social media can be both rewarding and tiring. I’m still trying to find the balance between suave self-promotion and being interesting without just being plain annoying. In terms of rounding up an audience for my blog, I’ve found Twitter to be especially useful. Like most Twitter users, I haven’t a  clue who half of my followers are, but some have proven to be really useful contacts. For example I met a lady on Twitter who helped me find some secondary reading for writing my novel. I met another lady who’s teaching me about chocolate and making material accessible for the visually impaired.

Finally, social media is opening up the world for so many people with disabilities right now. Whereas before peer support mainly involved occasional meetings or coffee mornings, people with disabilities can now communicate with each other on a daily basis. This is so important given that there are nearly three thousand people with disabilities living in inappropriate nursing homes or hospitals and thousands more, be it through lack of transport or Personal Assistance, trapped in their own homes. Social media is becoming an increasingly popular tool for PWD challenging injustice in their everyday lives, and as a result, our stories are being highlighted by mainstream sources including local and national newspapers. People who were once voiceless are now becoming very vocal, all from the comfort of their own homes. The inability to get out does not necessarily mean the inability to participate, to count, and to matter.

So although I should probably curtail my time skulking around on Facebook and Twitter, I’m not ashamed to acknowledge that social media has helped me become a better mother, a more conscientious writer and a fiercer activist. I’m so grateful to be part of a virtual community that accepts and helps me. It certainly doesn’t beat face-to-face contact but it does make the world that little bit more accessible. Not just for people with disabilities, but for everyone.

 

Ps. If you enjoyed this blog, ‘like’ and ‘share’. Joking!

Pps. Well, half-joking anyway

Legacies

Today, as my husband slinked into the sitting room to eat his dinner in peace, something unusual happened. Within thirty seconds he’d come back out into the kitchen and said in a casual tone certainly unfitting to the matter at hand, ‘There’s a bird flying around the sitting room.’

I closed my eyes as I imagined our black leather couch now covered in those trademark yellow and white stains. ‘You’re not bloody serious?’

‘Afraid so. We shouldn’t have left the front door open.’

Now, if you asked me if I was afraid of birds, I’d normally say no. But you’d need to contextualise. For example, I have no problem watching autumn migrations or gatherings of birds in the garden. Hell, because my daughter is a nature fanatic, I often have to follow them around the park, driving my wheelchair as slowly as possible so that it doesn’t ‘click’ and frighten them away. But the thought of one trapped in our sitting room, flying frantically, trying to escape, filled me with trepidation.

Walking softly towards the sitting room I peered in to see a little robin, with a fiercely red breast, casually exploring our sitting room. My husband and I looked at each other and smiled slightly, and I recognised something in him I wasn’t expecting, a softness. Normally, we would both be sort of like get that bird out of our sitting room before he shites everywhere, but this was different.  It felt like a presence, like an unexpected but welcome visitor. One of our mothers, perhaps, or Maisie, my mum’s friend who, before she closed her eyes for the last time just two months ago, gave me a green card with a little redbreast robin on it. The card simply read Thinking of You.

‘We have to guide him out, before he has a heart attack,’ my husband finally conceded, before gently herding him towards the front door and closing it.

For the superstitious among you, I’m sure you know that a robin is meant to represent a loved one since passed, and its presence symbolises that he/she is thinking of you, that he or she is near. For me, however, robins represent childhood innocence, dependability. Growing up, we had a conservatory at home and one morning, a little robin hopped in through the open doors while we all watched silently. He explored a little, he sang and he left. Soon, that same robin (or so we liked to think at least) came back every morning, let himself into the conservatory and made himself at home. It became routine, a ritual, and when I saw that robin this evening I was instantly reminded of it.

That association with robins is a legacy left to me by my parents. It’s funny how, even though that era is now gone, I remember not so much the robin, but how I felt when we all saw it for the first time, over twenty years ago. The wonder. The quiet respect.

I’ve been thinking about legacies lately, not least because on Saturday, over two hundred activists will come together in Mansion House to remember the influence that disability activists, both past and present, have had over our lives. That space will allow us to reflect on the achievements of the past, and to be thankful for what has been achieved in the name of people with disabilities thus far. But it’s also an acknowledgement that once Saturday’s event is over, we need to continue looking forward, keep striving towards true equality, ensure that our voices are always heard.

Like the robin from my childhood, some of us thought that these people were invincible, that no matter what, they would always be there. My memories of those who I will be remembering on Saturday are sometimes the only fuel that keeps me involved in activism. Sooner or later, we are going to have to look at the future, and it can be scary when someone we looked up to, be that a parent or sibling in the literal or figurative sense, is no longer here to guide us.

When it seems that all the greatness of the world is slowly disappearing, will we be able to find the courage to look within ourselves. to see what we can offer? And if we can’t trust ourselves to do this, who can we trust to educate our legacies to our children? That’s why we need to tell them about the past, the robin. We all need to know where we came from.

And sometimes we need a reminder, so that we may create meaningful legacies for them. We need to remember the past, not to live in it, but rather to use it as a blueprint to make our own mark in history.

 

 

 

 

 

School lessons

So, Alison is back to school on Wednesday. I know not every parent will agree with me but I for one cannot work out where that summer went.

Kids have a tendency to surprise you, though. Just this morning Alison had expressed trepidation about going into Senior Infants. ‘The work will be too hard,’ she moaned at me while I scoffed at her. Ten minutes later she had orally completed the first twelve pages of her new Phonics workbook. With Alison, I’d be more concerned about her getting bored than struggling. If she were to get bored, she’d lose interest and thus would begin the descent of a slippery slope into delinquency and mischievousness.

I suppose I’m still aghast at how much she’s learned in the last year.  Her reading skills are better than mine were at her age (it pains me to admit this), and she spent the summer doing Tullamore library’s Summer Reading Challenge. (This is where kids are challenged to read ten books over the summer. She read forty, easily). She’s retained most of her Irish and has been randomly coming out with statements such as ‘Six plus five is eleven’.

So she’s doing well which is a relief, because I had concerns about her starting at just four and a half. But of course academia, mathematical prowess and literary genius is not the be-all-and-end all either.

As the daughter of a wobbly mummy, Alison has learned that it’s good to ask questions about disability, and boy does she!! ‘How come you could walk before without a walker, but not now?’ ‘Why do you use  a wheelchair when you can walk?’ ‘How come these footpaths are not ramped? That’s very dangerous.’ I’m raising a mini activist. Together we are becoming a force to be reckoned with.

In addition, Alison has learned to deal with having a sort of celebrity mummy. If she thinks people are asking too many questions, she’ll change the subject with a kind of ‘who cares about that auld has-been in the wheelchair’ attitude. It’s so normal to her that she can’t work out what all the fuss is about. I used to worry that my disability would drive away some of her friends, but actually I’ve established a rapport with them all and subsequently lost my wondrous tinge.

I’d also consider her to be kind. I’ve tried to teach her empathy, sort of ‘how would you feel if’ scenarios. She can identify if people are being unkind to each other and she tries to include people. Sure, she’s not perfect, and if she’s part of a clique she’ll get caught up in it. But she also knows when she’s in the wrong – she’ll look at me with her big blue eyes that say, ‘sorry mum, please don’t give out, I love you!’

And what have I learned? I’ve learned that there’s more to being a mum than the ability to run around after your child. I’ve learned that I am in fact not an alien and am just the same as other mums. This year, I’ve made the nicest mum friends whom I love chatting to and I no longer have any qualms about asking them to help me out with lifts to birthday parties. I’ve learned how to let go and share my hilarious parenting fails with them instead of constantly being worried that they will judge me as a parent or report me to social services!

I’ve learned to enjoy motherhood – I mean, really enjoy it. I’ve learned to love myself, and take care of myself. Whereas before I felt like a fraud, I now know that Alison and I mean the world to each other.

And isn’t that the most important lesson of all?

 

 

D-Day

It’s the first day of the Leaving Cert exams, and I can’t stop thinking about my godchild, whose christening I remember as if it were yesterday, going in to sit what she’s been told are the most important exams of her life.

I was listening to the radio yesterday (not sure who – Matt Cooper, perhaps?) who was talking to students on air and generally saying listen – the Leaving Cert is important, but not that important. Study, but don’t stress. It’s not the end of the world. The Leaving Cert is not the be-all and end-all.

That’s certainly not the impression I somehow got when I did my Leaving Cert, fourteen years ago. I did Transition Year the year before, and I had been on a respite break with seven other friends with disabilities during that year (incidentally, that’s where I met my husband). The message I got from that week was that the best prospects for disabled people was in doing a computer course or going to the National Learning Network to do an endless string of courses in job preparation. Has my journey through mainstream education been a waste of time? I thought glumly. Now don’t misunderstand me, or interpret my reaction to be borderline snobbery, but I was afraid that society was trying to mould me into something I wasn’t. These courses are great, but I do think that students with disabilities should feel that anything is possible.

So, as a statement against the status quo, and because I wanted full control over my future, I decided that the only way I was ever going to do this was to get 500+ points in my Leaving Cert (yes, I am a little mentally unstable-how did you guess?) For nearly two years, I threw myself into my studies. I don’t know how I still had friends at the end of it because I never went out to the Harriers or the Bridge House. I don’t exaggerate when I say I spent a solid six hours after school, studying. Soon I became obsessed. If I was going to spend the time studying, I had to be the best. If I got 75% or less in a class test I would openly bawl my eyes out.

I remember my dad saying to me about a month before the exams that if I didn’t slow down, I would have a massive heart attack and be dead before the Leaving came around. He was so worried that he threatened to stop me sitting them altogether. I looked at him incredulously! What did he know? How could he possibly understand how it felt to be the only person in my year with a (visible) disability and so much to prove? Didn’t he know how important these exams were to my future?

No, and he didn’t care. Neither did mum. What they did care about was the fact that I had no friends apart from John Paul, about the fact that I couldn’t relax, or take an evening off study without having a massive panic attack, about the fact that at 12 o’clock they would walk past my room on the way to bed to find me still studying, my books sprawled all over my bed and me panicking because I couldn’t memorise that Irish poem or the ins and outs of the heart in spite of studying all evening, probably on little or no food and definitely no rest (food and rest is for the weak, yo.)

And yet, it paid off. I got enough points (bang-on enough) to get into Trinity to study English (the DARE scheme may have helped a little). The relief was immense; it took a long  time to get used to not stressing out over the Leaving. And just when I became accustomed to calmness, I had my dissertation and exams to worry about! I really wanted an Honours Degree, and I did study just as hard (albeit in the final few months!) and it paid off…

…and now I am a writer, spending day after day writing and researching, blogging and editing. Did I need a good Leaving Cert to do this? Was it worth the hardship? Personally, in spite of the hellish experience that was my Leaving Cert, I don’t think it’s fair or right at this point to be dismissive of its importance. How can teachers, parents, society think it’s okay to spend two years of a student’s life drumming into students that this is the most important exam they’ll ever sit, and then turn around afterwards and say that it wasn’t that important?

Yes, it’s true, no-one ever asks how many points you got twelve months later or (unless you’re an Irish teacher) you’re never asked about the main themes of A Thig Na Tit Orm. And yes, many of us do want our children to have a strong work ethic, but at what cost? Why are we still sending out the message that your worth as a person is based on one set of examinations, and lying to our young people, saying that it could shape your future for the worst or the best?

Because I’ll let you in on a dirty secret: your worth is not how many points you get. It’s how you use your talents to shape the future, be that through medicine, teaching or volunteering to help others. And guess what? Learning is fun – it’s true! I don’t mean school – I mean the learning you choose to do. I’ve done three correspondence courses so far and it wasn’t about the marks, it was about accomplishing little challenges. I loved them and can’t wait to do more.

So do your best in your exams, and spend the summer doing some proper learning. Learn how to cook, how to use the washing machine, how to budget. How to get a week’s worth of groceries for €25 so you can go out on a Thursday night. Meet new people and learn how to tolerate their quirks and annoying habits.

There are no grades, but these are lessons you won’t forget.

And Caoimhe, best of luck. No matter how these exams go, never forget that you are a kind and wonderful person and we all love you so, so much xx

Delicate Scent of Summer Dusk

I really shouldn’t be blogging tonight. I’m lucky enough to have a bit of work to do, work that I might actually get paid for. But I can’t concentrate.

I don’t know whether it’s because I’m ‘overdoing it’ as my two friends and husband protest that I am, or whether it’s this lovely weather distracting me and giving me an intense dislike for my desk at the moment. It’s been gorgeous these last few days, and my mantra is to make the most of life before it disappears through your fingers as fast as dry grains of sand. So I’ve been in the park, going for walks and trying to clear my head. And then I sit at my desk, and nothing happens.

Just half an hour ago, I took a break from my desk to bring out the bins, and as I stood there absorbing the fresh air and fanning away the midges, the smell of the warm air brought back memories: memories of having barbecues growing up that lasted until it got dark; memories of walking to the shop with a single pound coin in my pocket to buy sweets for all four of us; memories of having cycling competitions with my two younger sisters (in my younger, fitter days) around our estate, only coming back in when the other kids were called home too.

I really hope that one day, Ali will enjoy this freedom, but right now I don’t think she’ll ever be as free as we were. The dangers that were there when we were kids are still there now, and coupled with social media (I get the irony, believe me), you really can’t tell who is watching your kids and what images they have of them. Ali is only five and I’ve already taught her my address and phone number in case we ever get separated for whatever reason. We’ve done stranger danger, although how much of it she really understands I don’t know, and I worry irrationally all the time. This is normal, right?

I remember after the terrorist attack in Paris in 2015, I didn’t sleep for about two weeks. I got paranoid about every little noise in the night, about being in crowded spaces, about helicopters and planes overhead. And I’m not sure why it worried me so much, because I remember going to Coalisland (In Co. Tyrone, Northern Ireland) every weekend with my parents as a child and being stopped by soldiers at the border. Both of my parents worried about their Southern Reg car – it was dangerous at the time and it certainly made you stand out as an outsider and in the wrong area, a prime target for petrol bombs. As kids we were terrified, but mum and dad seemed to take it in their stride. They were used to it, it didn’t faze them. And if it did, they never let it show.

What  were they supposed to do, never go north? Or move back up and never go south? They did neither. We continue to travel back and forth to see our family, and will always do so, even if Brexit does mean tighter borders between the UK and Ireland (and after the attack at the Ariana Grande concert in Manchester this week, it’s looking like a possibility).

Our world is not safe, yet it has been reported that never before in history has it been safer to be alive. Polio, the plague and other diseases are almost entirely eradicated. Vaccinations against deadly diseases such as measles and malaria are widely available. Life expectancy is now into the seventies at least. And we will be spending the rest of our lives worrying about terrorism, bogeymen, rapists and the likes.

Listen, I’m not suggesting for one second that we should let our guard down and ignore what’s going on in the world. Nor am I saying ‘oh well, the world is an evil place, sure what can we do?’ Of course we must be seen to be strong in the face of barbarity. But our children deserve to live free of fear, because they are going to spend enough time worrying about things. Our children deserve to live, and to try and carve out a legacy to leave behind them for their own kids. They deserve the freedom to make their own mistakes and the freedom to recover from them.

They should be free to ride their bikes into the sunset, embracing the sweet smelling fragrance of a summer dusk.

RIP to those who were killed in Manchester 22.5.17, and condolences to your families.

Memories of Mum

As the most loyal of my followers know by now, May 7th marks two completely separate events: my little sister’s birthday and my mum’s (now eighth) anniversary. Of course they’re not separate at all; every year until the end of time (or of our family’s time anyway) we will think of the joy that Laura Ann Maye brought into our lives while weeping for our beloved mother who we miss more than words can describe.

Laura is twenty-eight this year, but it’s hard for me to think of her as older than eighteen, getting two birthday cakes at her birthday dinner and screaming as her hair caught fire from the candles. She’s in Helsinki now, working as a Postdoctorate Research Fellow at Aalto University (I double-checked this on Facebook), and yet I still think of her as my ‘little’ sister even though in many ways, she’s more of a grown-up than I’ll ever be.

Every year, memories come flooding back to me, and as I’ve already extensively spoken about my grieving process, I thought I would instead share some of them with you to show you what an amazing, quirky, and often downright inappropriate lady my mother was.

  • ‘Girls! Oh my God girls, get up quick, it’s 8.15! You’ll be late for school!’ I jolt awake, not even thinking about how dark it is and turn on the sitting room light to discover that it’s not 8.15, it’s 3.45am and mum has looked at the clock backwards.
  • Interesting fact – mum handmade all of our communion dresses as she disapproved of the ‘poofy’ look. Everyone thought mum had bought mine in Laura Ashley. Mum also handmade a lot of her own clothes – jackets, dresses, skirts, waistcoats.
  • Mum was the worst at accumulating shite (no other word for it), collecting keyrings, little notebooks, Harrod’s beanie babies, candles, little pebbles. That was fun after she died, trying to decide which collection meant more to her! Not.
  • Mum was an artist. In her early days she did a lot of portraits, then she went through a phase of drawing violins, then front doors surrounded by pretty flowers. She made her own Christmas cards. She even painted designs on the little doorknobs on the kitchen presses. She loved bright, bold, primary colours. She did an interior design night class in Portabello College. If she had pursued this line of work. she’d be famous now. Beyond a doubt.
  • I have a ridiculously sweet tooth, something I inherit from my mother. It was her that introduced us to sticky toffee pavlova and knickerbocker glories. Honestly, I don’t know how we’re all stick thin either. Think that my siblings and I should donate our bodies to medical science.
  • I wouldn’t classify my mum as a scary person, but by God – the day she found out I’d told Sr Concepta in fifth class that my computer at home was broken and I had to write everything down (which was a lie, I just hated the computer) she called into the school, marched up to my class and said ‘Sarah Maye, get your ass out here right now!’ She ate me. Till the day she died she never lived it down.
  • We did get to spend some quality time together though, like all the times we went for various appointments, first in the CRC and then in Musgrave Park in Belfast. I remember walking up and down corridors and halls with these bobbly things all over my thin little legs and mum telling me I was modelling these special diamonds. I also remember falling in love with the doctor in Belfast (I was ten) and mum telling him all about it. Morto.
  • I also remember coming home from a respite holiday in Roscommon when I was eighteen and walking in the front door. The first thing my mother said was ‘What the hell is that thing around your neck? (It was a new chain, from JP) Who is he?’ After explaining to her that I’d met a boy and we were now an item, she smirked, took up the A4 pad that was on the coffee table and started explaining the birds and the bees, with explanatory diagrams. Lads, I’m not joking – she knew what she was doing because it was the best contraceptive ever. A year later and JP and I were still nervous of leaving the ‘holding hands’ stage. All I could picture was that bloody diagram.
  • I’ll never forget the day that Laura came home for the first time, and mum saying I couldn’t hold her until I fastened my dungarees on my own. The fact that I remember this should illustrate how real the struggle was. She placed her in my arms and I remember thinking how tiny she was and more to the point, how unexciting she was. For a while all she did was snooze in her Moses basket and lie there waiting to be fed and changed (lazy git). I couldn’t wait for her to grow up and play with me. And to be fair she, Stephen and Alex were the best siblings ever.

    But Laura and I are close too. I’ve been privileged to watch her through school and attend both her college graduations. Laura, I’ve no doubt that mum is immensely proud of you and what you’ve achieved. And it’s so unfortunate that your birthday is also her anniversary, but you know what? She wouldn’t want you to be miserable on your special day.

So have a lovely day and don’t feel one bit guilty about it, because the 7th May may have taken Mum from us, but it also brought you, and we are all so lucky and grateful that it did xx

1-7 May: Maternal Mental Health Week

I was just scrolling through Facebook this evening, you know, doing some important web-based research, when I saw a post saying that it was Maternal Mental Health Week this week (May 1-7). According to talkingmums.com, up to one in five women experience mental health issues either during pregnancy or in the year following birth. Yet, out of these women, only 7% of them are typically referred for specialist help.

How many of you, like me, have suffered from PND, yet never admitted it to a doctor or health professional? How many of you out there are still suffering?

I’ll never forget the moment I knew for sure I was suffering from PND. Alison was only three months old and we had just discovered (or rather, the Public health nurse finally believed me) that she had a cow’s milk allergy. We had Ali put on special formula. She started gaining weight and became the happiest baby ever, sleeping through the night and everything.

I should’ve been happy, but I wasn’t. Relieved, yes. Happy? No.

All I wanted to do is disappear. I was just waiting for the right time.

I had this vision of having PND as standing over your baby’s cot with a pillow in your hand or wanting to throw your baby down a flight of stairs. While I appreciate that some women feel like that (and this doesn’t make you a bad person – you’re unwell and need help), I didn’t. I felt that my daughter was the most perfect person in the world and that she must have done something truly horrible in life to end up with a mother like me.

I didn’t know that PND meant looking in the mirror and being repulsed by the pathetic specimen staring back.

I didn’t realise that ignoring it wouldn’t make it go away. I ended up in the doctor with chest pains, shoulder pains, stomach aches and yet the doctor couldn’t find physiological reasons for any of them. She prescribed painkillers which didn’t seem to help. I always denied feeling down or depressed. Big smile on my face. Sure what would I have to be depressed about?

By May 2014, I could barely get out of bed. I wasn’t eating properly. I was crying all the time; it was all  I seemed to want to do. In order to get from one end of the day to the other, I had to measure my time in hourly units. Then half-hourly, and towards the end, minute by minute. If I can hold myself together for ten more minutes I’ll be grand, I would think to myself. But of course, I wasn’t grand – far from it.

When I took time off work, I considered my treatment options. I know it sounds ridiculous and shallow, but the thought of going on antidepressants filled me with dread. I wasn’t too keen on counselling either as my previous experiences were quite negative. But I knew I had to do something, so I started writing. Writing how I felt. Writing about my flaws. Writing about my talents. Suddenly, I felt liberated. I’m not recommending this course of action over medication or counselling, but writing was my saviour. It’s something I enjoy, am (reasonably) good at and writing my thoughts and feelings down helped me to own them, and then let them go.

Postnatal Depression has changed me into someone different to who I used to be. I am more sensitive now, and I hate myself for it. I’m still conscious of how people perceive me as a mother. In addition, I now have to make a conscious effort to look after my mental health, to recognise the signs of feeling sad or overwhelmed and act on them before they take over. I also have to be careful. I love helping people, but I have a tendency to internalise their problems to the point where they become my own problems. Sometimes I need to step back, say no and this is hard. I hate doing it.  But I have to remind myself that if I don’t mind myself, I can’t help others.

This week is National Maternal Mental Health Week, and while it’s great to have a platform to write about PND and mental health, the issue of maternal health shouldn’t be confined to a mere seven days of the year. We need to open up the conversation to all mothers, make them feel supported and not feel alone. When I published my long preamble about my experience with PND, I was convinced that either no-one would read it or that it would be dismissed as being a tad melodramatic. What I didn’t expect was the hordes of girlfriends, as well as women I’d never met, emailing me their stories and reminding me that I was not alone. Thanks to those women for validating my story and for making me feel that my depression was completely normal.

And if you are reading this, and you are silently suffering from pre- or post-natal depression, you are not alone either. Look after yourself and get the help you need. Trust me – even mothers who appear to be perfect can suffer silently.

You are worth the help. And after the fog lifts, life becomes so much simpler.

You are wonderful. You are beautiful. You are everything to your children, and they deserve you just as much as you deserve them.

But you can’t pour from an empty cup, so look after yourself.

Mother’s Day Hunger

Tomorrow is Mother’s Day. Normally I’d anticipate it coming but this year it just hit me out of the blue. ‘Happy Mother’s Day!’ shrieked Alison on the way out of school on Friday afternoon, waving yet another piece of brilliant artwork. And it is brilliant; you can see the improvements in the detail of the people she draws. They’re no longer stick people, they have trousers and dresses, eyelashes and even bracelets. She’s growing up every day, because of me, or in spite of me – I’m never sure which.

We spent the whole day in town together, and after the two hours in the park decided to pick out something for her two nanas’ graves. We eventually found something vaguely acceptable, but as I surveyed them, something sank in my stomach. It’s not only the feeling of loss that comes with every Mother’s Day when your mum passes away. This was a very real but unreasonable sensation. I’ll try to explain.

Every Saturday if the weather’s good, Ali and I will go for lunch, a kind of mother/daughter bonding activity. It’s become a habit, a ritual, one I used to look forward to (I love cooking  but hate the clean-up after). Now, however, the novelty has worn off and I’ve started making dinner at home more. My cooking is nice, but also there’s nowhere in the world that will ever serve food the way mum used to make it. Sausage stew, roast pork, ‘twice-baked’ spuds filled with ham, onion and cheese, cheesy veg, lasagne (I’m salivating here and it has nothing to do with my Cerebral Palsy). I know it sounds ridiculous but even if I followed recipes the thought of never eating her food as she cooked it hurts. I’m hungry for the nice food.

And as with every Mother’s Day, I’m hungry for her.

I’m hungry for the ridiculous fights we had on countless Mother’s Days when she used to insist  on cooking dinner (probably for the same reasons that I can’t seem to find a nice restaurant these days – she liked her own food) after which she would moan incessantly about how nobody helped her even though she liked doing things her own way and she had previously insisted on cooking alone.

I’m hungry for the ridiculous squeals of appreciation at presents we got in the Pound Shop that she’d probably given us money to buy (wow, just what I need! A stuffed penguin!) and the feeling that no matter what you got her it would never compensate for the job she did as a mother. And her smiles as she opened the cards and cooed over our artwork.

I’m hungry for who she could’ve been, whether that might’ve been a famous interior designer, a ‘hip’ nana or a grumpy curmudgeon and I often wonder what she would have made of JP and I having Ali, and whether she would’ve insisted that she wasn’t an on-call babysitter with one breath and threatened to adopt my daughter with another. I wonder if she would approve of my choice to leave a paid job and enter the murky world of freelancing, or if she’d be embarrassed by my seeming laziness. She certainly wouldn’t approve of the wheelchair, but I also know that she kind of, sort of, trusted my ability to make sensible decisions.

I’ll never know what she did and didn’t approve of. I only have one regret, and that is how hard I was on her, how much I expected of her. Being a mother is hard work and scary sometimes, and sometimes she had bad days like us all, which she tried to hide from us. When I was small, I thought my mum was invincible, and even when I was told at the age of twenty-five that she had passed away, I said ‘no, sure try waking her again, she’s just a very heavy sleeper(!!!) (She slept through a bomb which demolished some of her house in Cookstown at the age of fourteen).  I, like all of us, took her death hard, and when my own daughter was born three years later, I panicked. How was I going to do this without the support of the woman who had such a major role in who I am today? And yet, I did, sort of. Call me crazy but during that time I had to believe she was close by otherwise I would have crumbled altogether.

Now, my grief is more reserved, but it won’t stop the tears on a day like tomorrow. Yet tomorrow too will come and go, feelings of happiness and sadness intertwined with begrudging acceptance. I think one of Mum’s favourite country and western singers, Kathy Mattea, puts it more eloquently than I ever could:

‘We’ll never know what could have been, but looking back we see
What could have been, and never was, was never meant to be.’

Now there you go mum, your own Mother’s Day blog! No ‘I wish heaven had a phone’ memes for you! xxx

 

 

 

Wheel Independence

 

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My poor, sad, neglected wheelchair (sad face)

 

 

I have really missed blogging here for the last two weeks (I’m back, yay), but to be honest, I just needed a break. I felt wiped, depleted and I know from hard  experience that when I feel like this it’s better to take a breather rather than having a meltdown and sobbing in my jammies at the side of the canal at 4.30am (ahem, apparently). I have been busy though with activism, and I got my submission in to Date With An Agent (I hope – I never enclosed an SAE to acknowledge my entry but I know my  future award winning novel will totally be selected), so that could account for why I’m that little bit more tired.

Or maybe it’s because for the last month and a half, I’ve been without my electric wheelchair, and the extra physical effort of walking everywhere is taking its toll. And thank God it is finally getting fixed tomorrow, because I am wiped.

My dear mother, who spent the first five years of my life doing physio with me every morning, was dead set against me using a wheelchair. We lived in a two-storey house when most of my disabled friends lived in bungalows. She wasn’t too keen on me having a wheelchair in college, although she understood the reasoning behind it. Growing up in a mainstream world led me to believe that one’s value was largely based on their physical ability to do things and to get around.

When I had Alison, my friend advised me that I wouldn’t want to miss out on doing things with my daughter, and so I got myself an electric wheelchair. Being ambulant I don’t think I’d have any chance getting one off the HSE. And for the first time since becoming a mother, I wasn’t housebound. I could take Alison for walks whenever I wanted, long walks and still have the energy to come home and do some housewifey things, and write my masterpiece. This is why the phrase ‘confined to a wheelchair’ annoys me so much. A wheelchair doesn’t confine, it liberates! Without it, I feel confined, trapped within the limitations of my body.

I firmly believe that when we are given access to tools like wheelchairs, technological aids and Personal Assistance, we are enabled to become the best us we can be. There is great strength in acknowledging that your physical impairments are not the problem, that society needs to address the needs of people with disabilities and be more inclusive. Above all, I believe that people with disabilities need to drive this change themselves.

It came to my attention over the weekend that student Kathleen McNamee, senior editor of the University Times, ‘cripped up’ or explored Trinity College campus in a wheelchair. What’s wrong with this, you might ask. Isn’t it great that people without impairments are trying to see the world through the eyes of a wheelchair user? Well firstly, Kathleen is not a wheelchair user; at the end of her article she wrote: ‘While I will be happy to hand my chair back tomorrow morning, I am also aware that not everyone is afforded this opportunity’. To me this implies that she sees the ‘problem’ as the wheelchair,  not the inaccessible environment. Also, why did she have to ‘crip up’? Why didn’t she look for the experiences of full-time wheelchair users who navigate the campus on a daily basis?

Secondly, I felt that the article was a little unfair on Trinity. When I carried out an access audit in 2004, we identified all of the problem areas and efforts have been made to fix things: the pathway through Front Square, there’s now a lift up to the Pav (the on-campus watering hole) and ramps to the buildings in Front Square. Things are far from perfect, but they’re improving.

Irish Rail, however, seems to be getting worse. A friend of mine told me recently that on principle she refuses to give any train station 24 hours’ notice of her intention to travel because she sees herself as equal. Today I had to travel by train (I had no wheelchair, just my rollator) and didn’t give notice, so I had no reason to be disgusted when assistance didn’t appear in Tullamore (even though I rang an hour beforehand), leaving me no choice but to fling my rollator and myself off the train. Had I been in my wheelchair I’d probably be writing this from Galway!

So to summarise, I’m looking forward to my wheelchair being repaired in the morning and to getting my independence and energy levels back. My normal life back. I know I should make more of an effort to get fit, and some might think I shouldn’t be so lazy. Feck that. My daughter needs a mummy who has the energy to do things and go places with her, and I need the energy to write, and that’s exactly what my wheelchair offers. It doesn’t matter how you get there, as long as you do!

Memories on a Birthday

 

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Alison’s first birthday. Not pictured: me blubbering like a baby

 

At 11.52am on Thursday 9 February 2017, Alison will be five years old. I can’t believe that my not-so-little girl will be five today. I also cannot believe that I, a total dummy when it comes to kids, have been a mummy for the last five years.

Every year since Alison’s first birthday, I’ve always used the ninth of February to look at the year gone by, to marvel at how Ali has grown and what she’s learned. This year has been a particularly busy year in Ali’s life. She started primary school in September and is currently excelling in Irish and reading. In the evening she sits down the minute she comes home from school, anxious to get her homework done. She then spends the rest of the evening churning out some ever-impressive artwork at her desk, each picture better than the last. It makes me so proud to be her mummy.

In truth, it’s only really in the last two years that I’ve started to believe that I deserve to be her mummy.

When the words ‘disability’ and ‘care’ are thrown into a sentence together, it’s often wrongly assumed that the disabled person is the one being cared for. If you google ‘disabled parenting’ there is very little support or advice out there for disabled parents. On top of that, there is a narrative that disabled parents are inadequate, that their children are more susceptible to abuse and neglect, and that they cannot be trusted to make sensible decisions regarding their children’s welfare. Just this week I had a lady write on my Facebook page that she had no idea that people as disabled as I am were capable of raising children and admired my bravery in sharing my story. (She had seen the documentary I did a few years ago, Somebody to Love). Undoubtedly she meant well but it was a stark reminder of how hard our family has had to work to be accepted as part of the fabric of our community.

I find Alison’s birthday hard for many reasons. Firstly, because the sense of gratitude I feel is overwhelming: there are so many women out there who would love children and yet I, the absolute baby dummy, was blessed with the most beautiful daughter. Secondly, because I don’t really want her to get any older and lose all the wonderful innocence she has now. But mostly because it’s been such a struggle to achieve the relative normality that we enjoy now. And thankfully, she has no comprehension of how this family has struggled.

Every year, I’ve always cried as Alison blows out her birthday candles. This is because at Alison’s first birthday party, she grabbed the flame with her little hand, only crying for a split second with pain. She had faced danger, and overcome it. I had faced doubts and ongoing criticism for the first year of Alison’s life from so-called ‘professionals’, and I was not brave enough to challenge them. Instead, I stayed quiet, pandering to whatever I was told in the belief that if I didn’t, my child would be taken from me. I believed I was useless. I believed that I was a danger to my own child. I believed I was not the mother she deserved.

 

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Alison with her daddy on her third birthday blowing out her candles. Not pictured: me blubbering like a baby.

 

But in spite of myself, the years have flown by and I have managed to get her to five reasonably happy and healthy. I’ve managed to gain credibility as a semi-respectable parent in my hometown and in Alison’s school. And Alison is so intelligent, witty, kind and beautiful that I feel honoured to be her parent. She makes both JP and I proud every day, and for the most part we don’t take for granted the richness she’s brought to our lives. Our world revolves around her, as it should. We just love her so much.

 

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Alison on her fourth birthday – you all right in the corner there mummy?! So embarrassing….

 

I’ve no doubt that Alison will have a lovely birthday, and all that I can hope is that the emotional scars continue to fade. But please don’t judge me if you see me sniffling over her birthday cake again. This girl is the centre of our world, and by God, we’ve fought so hard to keep our little family together. And, without doubt, it’s been a struggle, but so worth it.